Nipple Saving Mastectomy without Reconstruction

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GPH
GPH Member Posts: 8
edited February 2020 in Breast Reconstruction

My wife has been diagnosed with DCIS and is contemplating a BMX without reconstruction, largely because she fears that reconstruction will involve multiple additional surgeries, which she dreads. Her PS today suggested she have NSM without further reconstruction. Everything I have read indicates NSM is really a first step toward reconstruction, which my wife wishes to avoid. Has anyone had NSM without further reconstruction (or grafting), or does it always lead to other procedures? Can anyone comment on how the results of NSM looks without further reconstruction? Sincere thanks for any advice/insight you can share.

Comments

  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    I did look into this for myself prior to undergoing surgery, however I didn't actually speak with a plastic surgeon regarding this. I have seen one (yes 1 ;0)) picture of this procedure on the internet and I wasn't overly impressed. I guess it would depend on the skill of the surgeon. I don't think it's common for a bilateral without reconstruction simply because the nipple may not sit on the chest properly once the breast tissue is removed but then they may overcome this problem by removing the nipple and areola and then reattach it once the excess skin is removed? What about women who transition into men and have their breasts removed? Think Chaz Bono or other reality stars. ;0)

  • pupmom
    pupmom Member Posts: 5,068
    edited September 2017

    I don't see the point, but that's just me.

  • beach2beach
    beach2beach Member Posts: 996
    edited September 2017

    Hi GPH,

    I had direct implant at time of surgery with nipple sparing. Is a direct implant an option for her if she wanted a one step recon?

    Just a thought.

  • GPH
    GPH Member Posts: 8
    edited September 2017

    Thank you. She has considered this, and the PS says she could receive an implant when the mastectomy is performed, but she is troubled by the prospect of follow up surgeries and potential complications. Have you had to undergo additional procedures or has it been just one operation? Thank you ever so much for responding.

  • beach2beach
    beach2beach Member Posts: 996
    edited September 2017

    Nope. Was done at the same time. Nothing else needs to be done. Natural tissue recon was not a real option for me. I'm thin so from abdomen was no good and anywhere else I would have had incisions and I did not want more surgery and scars to deal with. Many get tissue expanders, they get filled at intervals until the desired size. I was not big to begin with so I went with a comparable size implant so no need for tissue expanders. Those expanders need to be swapped out for the actual implants when the skin has stretched enough and size has been met. PS suggests a MRI at 3years to make sure implants are good. At some point years down the line they say to replace implants as for anyone who gets implants, but I'll deal with that at that time. I would have been ok with no recon. Even told my PS if he could not do the direct implant, to just forget it. I did not want to be in surgery any longer than i had to be and did not want to go through the expanders. Just my personal choice.

    I have been lucky I guess, surgery went well, had no complications and was up and moving same day and went back to work 3 weeks after. Not everyone is the same.

    So much happens and decisions to be made from time of dx, it can be very overwhelming. She should go with whatever makes her feel comfortable.

    Maybe if you post in the specific forum of Mastectomy Without Reconstruction, there may be women who have chosen nipple sparing without recon.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited September 2017

    I also had nipple sparing, direct to implant, above the muscle BMX. Everything was done in one surgery that took about 4 hours. It wasn't easy, but it wasn't that bad.

    I did develop an infection at 5 weeks post op and was hospitalized for 3 days. I always wonder if the fact of neoadjuvant chemo contributed to that. I've been fine since.

    I'm reasonably happy with the results. I have some rippling that could (per PS) be helped with fat grafting, but I'm not real keen on more surgery. Maybe I'll change my mind later.

    I have not heard of this type of surgery without reconstruction.


  • GPH
    GPH Member Posts: 8
    edited October 2017

    Thank you ever so much for replying to my query.

  • GPH
    GPH Member Posts: 8
    edited October 2017

    Thank you very much for replying. This forum makes us feel less alone.

  • GPH
    GPH Member Posts: 8
    edited October 2017

    Thank you very much for your help.

  • ravzari
    ravzari Member Posts: 277
    edited October 2017

    The results with no reconstruction may depend on her starting breast size.

    Nipple sparing was offered to me, but my PS told me that, because of my size (DD), it'd likely not look very good and there would be a lot of redundant skin and puckering around the nipple so I might look like a slightly deformed AA cup afterward.

    If your wife has larger breasts, she may want to go with a free nipple graft (if having a chest with nipples that aren't 'reconstructed' or tattooed is important to her) instead of a nipple sparing mastectomy if her aim is to be flat and not reconstruct.

    If she has smaller breasts, nipple sparing will likely be able to be made flat without extra skin puckering.

    Since I kind of wanted to keep the nipples to have some sense of a 'normal' looking flat chest, I opted for free nipple grafts instead.

    The main difference is that a grafted nipple loses a lot of sensation; for some people they're completely numb. For me, they can feel hot, cold, pressure, I know if something is touching them, and they do respond a little to cold (tiny headlights!) but since the pedicle is gone they've lost most sensation and can't really 'perk up' like a nipple in a nipple sparing mastectomy could.

  • Ashweb901
    Ashweb901 Member Posts: 67
    edited September 2018

    I am scouring the Internet looking for pics of what it might look like to go flat but keep my nipples (I had a NSM bilaterally with TEs three weeks ago and having cold feet about implants.)

    Has anyone found any pics

  • VegGal
    VegGal Member Posts: 507
    edited September 2018

    You can probably find some pics if you look for "female to male transition".  Dr Gary Alter's website has a lot of photos.  People in the transgender community have it done all the time. 

  • Ashweb901
    Ashweb901 Member Posts: 67
    edited October 2018

    GPH - did your wife get nipple sparing mastectomy without reconstruction? I’m getting my expanders taken out to go flat and there’s arent any photos or patients that I know of...

  • Thresher
    Thresher Member Posts: 1
    edited January 2019

    Wow!!! Thank you, thank you!! You are the first person I have ever heard say these words:

    "Since I kind of wanted to keep the nipples to have some sense of a 'normal' looking flat chest, I opted for free nipple grafts instead."

    Now that is what I call brave, to say that, no matter how you may identify gender wise... because, really, does that matter? Someone else in one of these forums said if you aren't having reconstruction then "what's the point?" of keeping your nipples... really? really? Well, I shouldn't be judgmental but I just do not get that. Its like saying don't bother sewing the tip of my finger back on, it might not have all the original feeling...

    The key word is "normal" and what is normal for each person is different. For some of us having a flat chest with our own nipples just seems completely RIGHT for us. But I must say I have felt very alone in this until now.

    I just had a double mastectomy on Jan. 10, 2019. I did a lot of research in choosing my surgical teams. My cancer was early stage and I was ok for nipple grafts. I did not have reconstruction but I had a plastic surgeon plan and draw on the opening incisions. After the oncological surgeon finished, the plastics team reattached my nipples and closed me up. My nipples are smaller than they were. The areolae were reduced and they look pretty cute actually. My chest is very smooth and my incisions are very thin.

    I looked at a lot of flat photos online and a lot of photos of FTM top surgeries. I am 57 years old. In my lifetime I have identified as bisexual, lesbian, and more recently female born non-binary/genderqueer... but I I am not transitioning, I do not want to become a man. I have had cancer and have a genetic disposition for more. I probably would not have had my breasts removed otherwise. But I can't say for sure... perhaps if I was 25 years old at this time in history I might be making other decisions...But now I am having my own kind of post menopausal transition, initiation, sacred change, if you will...

    I have heard it suggested that perhaps some heterosexual women are afraid they will be mistaken as trans if they keep their nipples on an unreconstructed chest. I have my own fears. I fear that my choice to have nipples will be seen as an indication of shame around my mastectomy. Will I not being wearing my scars first and foremost as badges of honor? Will I not be Flat and Fabulous? Will my chest be viewed as pornographic if I go bare chested?

    I actually feel most "myself" when I look androgynous. My breasts were relatively small. I was always a boyish-girl/girlish-boy... and in my aging this new me will make perfect sense. I know that's not for everyone. I asked my plastic surgeon how we could make sure my chest looks androgynous and she said " Don't do what my FTM patients do; don't take T and don't work out too much!"

    If I were a heterosexual woman today with cancer or a fem lesbian, or any of the many shades of being a woman, a female creature, and I could go flat and have my nipples, then that is exactly what I would do. No regrets. Lose weight, eat clean, get strong, wear amazing clothes or just the right old pair of jeans and a t-shirt, get a chest tattoo, swim in the ocean without a top on, be free. Be free, every being.

    PS, My drains are still in but if I get requests I will be happy to share photos of my healing chest...

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2019

    Welcome, Thresher! We're so glad you've found our community. And thank you for sharing your story! It's such a personal decision, but different perspectives are so helpful. We hope you're healing well!

    The Mods

  • wallycat
    wallycat Member Posts: 3,227
    edited January 2019

    Thresher, what a beautiful post. I agree that how we identify ourselves should not define/decide how we look. I'm hetero. My husband and I went to the PS for initial consult on recon and he turned green. Left it to me and was relieved I decided no recon. It sounded brutal to him but he didn't want to influence my decision. I totally understand the "normal" looking chest. I had not heard of nipple spare type surgeries and was not told or offered it (my tumor was close to the chest wall and I was a D cup so probably had lots to work with). I've toyed with tattoo so my chest doesn't look so "bald" when I look at it, but without fat pads, I just wonder how painful that whole thing would be.

    I do not regret not doing recon. I do miss the nipple sensation but if grafting would eliminate most of the feeling, then having them doesn't seem to resolve that issue.

    GPH, i hope you and your wife have been able to navigate this quagmire that is cancer. May her outcome be beautiful and you both share an amazing and long life.

  • orlando
    orlando Member Posts: 1
    edited May 2019

    Thank you Thresher I am about to embark on a double mastectomy and I am not going for reconstruction, I have managed to get the PS to understand I wanted to keep my nipples. I did not want implants and being really thin and 72 I was not prepared to have fat moved from my stomach. It was very hard getting my point across about still keeping my nipples, my general breast surgeon did not get it! I do not think many women are told this is an option for them and you have to really go out on a limb to get what you want. So thanks for sharing and encouraging me. I do have a concern and that is when you are thin do get concave dips in the chest?

  • cyathea
    cyathea Member Posts: 338
    edited February 2020

    Yes, yes, yes! I’ve come to the same conclusions regarding surgery. I want to go flat to remove breast tissue to improve my long term survival, but I want to keep my nipples to look “normal”. My BS didn’t understand when I suggested it and the PS outright refused saying insurance would not cover it and said his experience was that women who opted for this blamed the PS for their outcome (and he obviously didn’t want any bad reviews). I need to find doctors who will support me.

    I am not trans. I lived for at least a decade of my life without protruding breasts so why is it a problem to want that again if it improves my quality of life and my survival?

    Why should a trans FtMget to look better as a man than what I am offered as a hetero female? Why are my only options lumpectomy, mastectomy with “full” reconstruction or mastectomy without any care for how I look aesthetically?

    Society/our “western culture” tells women that they are only feminine if they have protruding breasts. This is wrong on so many levels. Insurance and doctors need to be educated. We need to tell them that, for some, it needs to be done differently.

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